I’ve not been well for a year… is this just how I am now?

[ConnellsNeckChain]

Up until Spring last year I was running half marathons, walking miles everyday, working on a busy ward where I was on my feet all day.

And then I randomly lost consciousness on the way to work one day and wound up in A&E on oxygen and fluids. I was taken to resuscitation (I have no idea why) and kept in overnight. I was discharged in a daze of pure tiredness and get a taxi home. I have no idea what happened other than it wasn’t a brain tumour (CT scan), chest infection/lung tumour (X-ray) or a heart attack (Ultrasound). I just thought it was one of those things. I’m in my 30s and have never ever lost conscious before but I thought maybe it was due to just a mix of factors that day?

Well here I am a year later. Many losses of consciousness later. Dizzy 24/7, vomiting once every week near enough, heavy head and sweating on the slightest exertion. I can’t walk for more than 5 minutes without feeling like the worlds slipping out from under my feet. I have no idea why. I used to love walking. I have periodic pins and needles in my face with the headache.

Drs thought it was anxiety - I didn’t but agreed to take antidepressants. They’ve made zero difference to my physical symptoms. I’ve even intentionally put on weight at the advice of my dr to see if it improved my symptoms. Nope.

I’ve got new glasses, bloods checked, drank shit loads of water, supplemented vitamin d, b12 and iron. Forced myself to walk more even if it makes me vomit or sometimes pass out.

Dr has only just now referred me to specialists, but said I’ll be waiting months and months to be seen.

Am I being too demanding?! This is just no way to live. I know it’s not anything sinister but my life just changed one day and I have no idea why?! Help!!

if you can afford it i'd def go and see a private neurologist...certain things need to be ruled out before you go down other routes! has the GP put you down as an urgent referral??? i am rather worried why your GP doesn't think you need to be seen asap, what is their explanation for you lossing consciousness regularly?how regular is regular?....i may have missed this but why do you have B12 infusions?

Guillan Barre Syndrome is worth checking out.

www.nhs.uk/conditions/guillain-barre-syndrome/

I used to help on the admin team of a huge UK B12 charity - you'd be shocked at how little the medical professionals know or understand and how B12 (or many vitamins in fact) work, and how few treat correctly
This 100%. The standard b12 test is pointless of the issue is either absorption. You can have a normal level of b12 but not absorb it. Indeed, the medical profession have had no training on the importance of b12.

What you need to ask with these symptoms is an active b12 test.

I had all these symptoms, reading your post really brought me back in time. It took me to information about b12 deficiency. My blood test for b12 (not active) was normal. In the end, I followed the advice from the pernicious anemia website and started to self I ject following their protocol, buying it online via theor recommended sites. It git worse before it got better but gradually the symptoms started to subside. It's been 5 years now. I self inject every 2 weeks as I do intensive exercise. As soon as I get to two weeks, I start to feel breathless, struggle to move fluidly, start to get pins and needles, then 2 days after injecting I am well again. Not diagnosed as the active tes needs to be done before starting to inject. It doesn't matter, but thank God for that website. Have a look at it.

Passing out episodes are a symptom of dysautonomia.

This is what is behind most vaccibe injuries. Sounds like what you have.

@ConnellsNeckChain have you ever seen an endocrinologist or had any endocrine blood test because a lot of your symptoms - dizziness, aching joints, vomiting, lethargy, weight loss could be down to something like Addison's disease (auto-immune primary Adrenal Failure).

It is very insidious disease and starts very, very gradually often over a number of months/years. Also it wouldn't be picked up with general blood tests. When my friends DC was diagnosed all the bloods were normal, until they tested Addisons specific ones and discovered she was very, very unwell.

She had been been getting blood tests/investigations for about 6 months at this point and she was very lucky that a dr picked up on it because it's quite rare.

Have you noticed any skin pigmentation changes? do you get headaches?

I was diagnosed with POTS last year. I ‘officially’ have fibromyalgia and hypermobility spectrum disorder too but I comfortably meet the criteria for hEDS, so I’m trying to get referred back to rheumatology.

I had covid for the first time in January and it sent my POTS wild. My resting heart rate was sky high for a month after I stopped testing positive and just walking to the kitchen sent it into the 140s. Climbing the stairs was like scaling a mountain and I almost passed out every time I stood up.

I know someone with very similar symptoms. She's been told it was likely caused by covid and exacerbated by the vaccine, as symptoms worsened considerably after the jab

Functional neurological disorder? That's what I've been diagnosed with and your symptoms are all included in what I have.

Has your Parathyroid Hormone level been checked? Hyperparathyroidism can cause all sorts of symptoms, including those you have described. It usually causes serum calcium levels to be raised but many people can have normal Ca levels and still have HPT. Were your calcium levels checked when you had the bloods done?

Your symptoms sound like long covid. Ask your doctor to check:
D-dimer
CD4
CD8
Platelet activation markers

If you're able, ask for microclot tests.

I’ve got Menieres and it doesn’t sound like it. Usually comes w some level of hearing loss and tinnitus and the vertigo is not constant, although comes in waves. I’m in drugs which controls it well. I’ve never lost consciousness with it and only been sick a couple of times, when I’ve stupidly moved during an attack. Tests by an ent will rule it out.
if I were you I’d go private for at least a consult, as it’s no way to live. I also had weird aches and pains a few months post covid & still have digestive issues - been through the testing mill too.

@ConnellsNeckChain

You probably have this.

www.science.org/content/article/rare-cases-coronavirus-vaccines-may-cause-long-covid-symptoms

@ArseInTheCoOpWindow I've certainly had stuff that came on and whether it's longcovid or vaccine damage I couldn't say as mine kind of timed close together. Stuff that I've never had before like nerve damage, high blood pressure, migraines